By Tim Baker
I have become a bit of a stalker on Twitter lately.
It's a shocking confession I know, worthy of public cancellation, but hear me out. As someone with a vested interest in the state of cancer research I've begun following cancer conference hashtags and inserting myself into conversations between learned medical researchers and eminent oncologists. I know. The sheer gall!
In fairness, I've felt less like a gate crasher and more like a welcome, if somewhat unexpected and exotic guest. The medical brainiacs are generally warm, receptive and patient in the face of my unqualified zeal to overhaul the state of cancer care in this country. I'm like the Greens Party of cancer care, big on unchecked idealism and agitating for change that I will never have to implement, leaving the messy detail for others to grapple with.
In one such exchange recently, I suggested it would be a good idea to invite cancer patients to cancer conferences. I know full well this already happens but, transparently, I was angling for an invite myself to bang on about my favourite topic - supportive care for men with prostate cancer and on hormone therapy. I co-opted one of the catchcries of advocates across the eons - whether they represent Indigenous communities, the disabled, refugees or other groups often under-represented when it comes to decision-making that impacts them: "Nothing about us without us."
Mere minutes later, I received an email from Associate Professor Arun Azad, Medical oncologist, translational researcher in urological cancers, and Chair of the ANZUP Translational Subcommittee. Arun is my "pitch oncologist", who specialises in advanced prostate cancer, a second opinion when I need one, and Melbourne-based for when I visit my old hometown from my home on the Gold Coast. He's also one of the best in the business and as warm and empathetic a medical oncologist as I've come across.
Would I like to attend ANZUP 2023's Community Engagement Forum as a patient representative? "I could not think of any patient better suited to having a discussion around survivorship and communication and on behalf of ANZUP," he wrote, the old smoothy. How could I refuse?
And so, I'm off to Melbourne as an official delegate to #ANZUP23, entitled Bouncing Back, in conversation with my pal Arun as part of the Community Engagement Forum.
What is ANZUP? "The meeting will provide attendees with a forum to discuss and present the latest updates in GU cancer treatment, research and supportive care and to learn more about existing and planned ANZUP trials," according to the website. GU stands for genitourinary and refers to cancers related to the urinary system and men's reproductive organs, which includes prostate, so conferences like this are a big deal for men like us with skin in this game. It's where research around new treatment options, better supportive care and clinical trials are shared, which in turn offers the hope of better treatments, improved survival times and less severe side effects.
The emphasis on clinical trials should also be of interest to all of us. I've benefitted from the large, international clinical trials that showed dramatically improved survival times for early chemotherapy and concurrent hormone therapy, which helped me overcome my fears of chemo. Eight years on, I'm living proof of its benefits. And I've participated in trials for exercise and medicinal cannabis which have greatly supported my general health and well-being.
I don't always understand all the science and study details shared among the medicos on social media and at such conferences, but I do think it's important that patients have a place at the table for such conversations. I am inordinately grateful that so many brilliant and highly qualified people are working to improve life for people like me, like us, living with prostate cancer and the eviscerating effects of hormone therapy. Afterall, if they are working on our behalf, it makes sense that they understand what our most urgent needs and priorities are.
For me, those most urgent needs include providing men with PC the tools and strategies to better manage the side effects of treatment, empowering patients to be pro-active in managing their own health, and new treatment options that don't involve the often-devastating impacts of hormone therapy. That's the message I'll be taking to ANZUP 2023.
Anyone can register to join the livestream of the Community Engagement Forum here:
https://anzup.org.au/community-engagement-forum/
About the Author
Tim Baker is an award-winning author, journalist and storyteller specialising in surfing history and culture, working across a wide variety of media from books and magazines to film, video, and theatre. Some of his most notable books include "Occy", a national bestseller and chosen by the Australia Council as one of "50 Books You can't Put Down" in 2008, and "The Rip Curl Story" which documents the rise of the iconic Australian surf brand to mark its 50th anniversary in 2019. Tim is a former editor of Tracks and Surfing Life magazines. He has twice won the Surfing Australia Hall of Fame Culture Award.
Tim was diagnosed with stage 4, metastatic prostate cancer in 2015 with a Gleason score 9. He was told he had just five years of reasonable health left, but eight years on, at 58, he's still surfing, writing, and enjoying being a dad. His latest book, Patting the Shark, also documents his cancer journey and will be published in August. Tim will be sharing weekly insights into his journey to help other men who have also been impacted by prostate cancer.
